There were clear differences in perspectives between the two groups as to the most important indicators of an exacerbation. This highlights that CF health professionals should take more cognisance of specific signs and symptoms reported by adults with CF, especially since these may be a precursor to an exacerbation.
BackgroundThe number of patients with advanced chronic kidney disease opting for conservative management rather than dialysis is unknown but likely to be growing as increasingly frail patients with advanced renal disease present to renal services. Conservative kidney management includes ongoing medical input and support from a multidisciplinary team. There is limited evidence concerning patient and carer experience of this choice. This study will explore quality of life, symptoms, cognition, frailty, performance decision making, costs and impact on carers in people with advanced chronic kidney disease managed without dialysis and is funded by the National Institute of Health Research in the UK.MethodsIn this prospective, multicentre, longitudinal study, patients will be recruited in the UK, by renal research nurses, once they have made the decision not to embark on dialysis. Carers will be asked to ‘opt-in’ with consent from patients. The approach includes longitudinal quantitative surveys of quality of life, symptoms, decision making and costs for patients and quality of life and costs for carers, with questionnaires administered quarterly over 12 months. Additionally, the decision making process will be explored via qualitative interviews with renal physicians/clinical nurse specialists.DiscussionThe study is designed to capture patient and carer profiles when conservative kidney management is implemented, and understand trajectories of care-receiving and care-giving with the aim of optimising palliative care for this population. It will explore the interactions that lead to clinical care decisions and the impact of these decisions on informal carers with the intention of improving clinical outcomes for patients and the experiences of care givers.
dilutional effect of the bronchial wash procedure and extrapolating to allow comparison with sputum data in our laboratory for CF and BE, the relative load of bacteria from the genera Streptococcus, Prevotella and Veillonella is similar in these three airway diseases. The potential role of these bacteria in the progression and pathogenesis of COPD requires further investigation. Introduction and Objectives A longitudinal microbiologic profile in adults with non-CF bronchiectasis (nCF-Br) is helpful in directing appropriate antibiotic therapy and may also have implications for prognosis. Information in this area is scarce with limited published data and small sample sizes of available studies. We have looked at longitudinal records from a group of nCF-Br patients attending a specialist clinic. Methods All available sputum microbiology results for patients over a 5-year period were analysed. Results 158 patients, average age 64.5 years (range 18e87 years), 58M:100F, had 2 or more samples available for analysis. The majority (149 (94.3%)) of these had a HRCT diagnosis. 23 (14.6%) of the 158 patients cultured no organisms. Abstract S105 table 1 shows the distribution of organisms found colonising the remaining 141 patients. In a subset of 72 patients with ¼6 samples taken over an average period of 2.7 (SD 1.0) years, 2 (2.8%) grew no organisms, 17 (23.6%) grew a single organism, 21 (29.2%) grew two, 14 (19.4%) grew three, 18 (25%) grew four or more different organisms on different occasions. Of the 806 samples analysed in this subset of patients, the majority grew single organisms, 83 (10.3%) reported 2 or more isolates. Among 46 of these 72 in whom Pseudomonas spp. was isolated, the initial isolate was followed by persistent colonisation in 30 (65.2%). Conclusions The distribution of colonising pathogens among our larger patient group is similar to those found in other studies. We have shown a higher degree of variation in organisms found over time than has been previously shown. S105
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